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  • Anonymous
      Post count: 93172

      Yes, but IF it is treated. RAI is the beginning. Once you “kill” the thyroid, you must take synthetic thyroid hormone instead – for the rest of your life. The trick is balancing the hormone levels, thus the need for regular bloodwork. Keep on keepin’ on. Joy in NoGA mtns.

      Anonymous
        Post count: 93172

        I read this quote on webmd.com

        “For decades, researchers have searched for ways to isolate the antibody that causes Graves’ disease in hopes of developing a way to stop it in its tracks. The disease is treatable but there is no way to prevent it.”

        When I was 13, they told me RAI would put Graves in “remission”. I understand that genetically, if you are bound to get it then there is no way to prevent it. But, you can live a normal life with Graves, right? As long as you thyroid is being monitored and all that? It isn’t just going to creep up one day and well…. ya know….? This website didn’t have a lot of information on it but…. that section just caught my eye. Thanks.

        Anonymous
          Post count: 93172

          Just how common is a second go round with RAI? I think my doc said 30% but that sounds awfully high to me.

          Anonymous
            Post count: 93172

            Your doctor’s experience with having to repeat RAIs could be different from the general norm. I have heard 10% here on the board and in some of my reference materials. But I cannot vouch that that is “gospel” either. The 30% figure is the one that I’ve occasionally heard of for chances of remission on ATDs.

            Bobbi — NGDF Online Facilitator

            Anonymous
              Post count: 93172

              Sorry-another question just popped into my head–is there weight gain associated with Graves or can you start gaining weight after treatment is started? or do you lose weight?

              Thanks again!

              bugzee

              Anonymous
                Post count: 93172

                Hi Bugzee. In my Graves experience which was diagnosed 2 years ago, and since have had the RAI done, I have had all of these symptoms. I am lucky enough not to have had an eye problem, but I had dry skin all over. I couldn’t sleep at night, one reason being itching. I itched so badly I would go to sleep scratching and when I would wake up in the middle of the night with anxiety, the itching would have stopped, but then I would lay awake with my mind and heart racing. I lost a lot of hair, especially on top and around my face. I couldn’t keep warm, even in the summer.I was dizzy and light headed also. I drive a school bus, so fortunately when that happened, I was on summer break or I would have had to quit. I lost thirty pounds (since the RAI, I have found it and then some.) The fatigue, in my case, my family were the victims. I hated my husband, who didn’t understand what was going on, and I lost my best friend. I was a different person altogether. It’s not been a fun ride, but I have gained a lot of faith and more love than I knew existed. When my husband stuck with me through all that I put him through, not knowing what this disease can turn you into, it was really a eye opening experience. I didn’t know this bulletin board existed until about two weeks ago. I think if I would have had this to look at, it would have made a big difference. I wish you the best of luck, Have Faith, and hang tough.

                Anonymous
                  Post count: 93172

                  The weight loss associated with Graves is not simply due to increased metabolism, unfortunately. A significant part of our weight loss can be from lost muscle mass, and possibly loss of bone mass. (Excess thyroid hormone causes the bone removal cells to work overtime, whereas they don’t seem to have any impact on the bone-building cells in the bond. So we tend to lose bone while hyperthyroid.) Muscle weighs more than other body tissues, but its presence also elevates metabolism: muscle mass, even at rest, consumes more calories than other body tissues. So it is BAD weight loss. When we readjust our metabolism by getting our thyroid levels under control, we are often at alower level of metabolism than normal because of muscle loss. So we cannot eat as much as normal without gaining some weight. When the levels are normal, the muscle mass starts to return, but it is not strong muscle unless we exercise. The returning muscle appears as weight gain, “good” weight gain, but weight gain nonetheless.

                  Whether you ultimately gain much weight or lose much weight depends upon your caloric intake during all of these stages of transition. Some folks actually gain weight while hyperthyroid (although that is not the “norm”.)

                  Weight issues are hard in our society. The skinny starlet is put forth as the epitome of beauty. So the temptation is to view weight loss (even if it is muscle) as “good” and weight gain (even if it is going to elevate metabolism levels) as “bad”. Right now, however, what you should be concentrating on the hardest is “good nutrition.” Your body suffers as a result of this whole disease process, and until (and long after) you get your thyroid levels under control, you need to be worried about getting the proper nutrients into your body. Avoiding “empty” calories can be extremely helpful. But do not try to starve yourself to a smaller size by avoiding nutritious foods in the proper amounts during the day. You might maintain that slightly smaller frame, or that lower weight, but you will find your health diminished, too.

                  Bobbi — NGDF Online Facilitator

                  Anonymous
                    Post count: 93172

                    Hey Bugs and all,
                    I have had this wonderful disease since the summer of 04 and have run the gauntlet of most of the attachments that go with it. I just went through my second orbital decompression to save my optic nerve, now I just wait for the muscle surgery hoping that will give me enoug of my sight back to drive again. Mood swings have be a constant companion as my wife can attest to, one minute I’m a monster then te next I’m a blabbering idiot! The joint pain has been with me making me feel a lot older than my 42 years, I have been in the hospital twice with cardiac due to the tachycardia, arrgghhh. And I have been bouncing between 205 and 185 due to the meds and other things, and my levels have come from super high to super low and back again without them leveling out for more than 2 weeks. I haven;t worked since my discharge from the Army in September 2004 but of course Social Security says I can work, not just at my previous jobs!! Each week seems to be a new venture LOL. Keeping the chin up- Weebles

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